3 posts tagged “not alone”

Epilepsy Awareness Month: The value in helping others

Posted November 6th, 2015 by

It’s November, which means it’s Epilepsy Awareness Month. During our #NotAlone campaign, we shared how PatientsLikeMe member Letitia’s experience on the site helped her feel less alone in living with epilepsy.

Letitia (Letitia81), a member of our 2014-2015 Team of Advisors, explains:

“I enjoyed connecting with others suffering from seizures and exchanged ideas about diagnostic tools such as the 72 hour EGG, treatments, triggers and the like. The most beneficial data that I found on this site was learning about epileptologists and more about epilepsy surgery. Prior to finding out about such a specialists, I continued to use the ineffective treatments given to me by general neurologists for 21 years. After doing some more research on the epileptology, I fired my neurologist and went to see the epileptologist in my area, who was able to perform special testing to accurately diagnose and recommend epilepsy surgery for my condition. As a result, I underwent pretesting last year for epilepsy surgery and after successfully passing all pre-test, I had my surgery (Left Temporal Lobectomy) on August 16, 2012 and have been seizure free ever since! My surgery was very successful and the chances of me having seizures again is very unlikely. I’ve made it my passion to share my story and resources with others who are suffering and/or know someone who is suffering from uncontrollable seizures and epilepsy.”

But Letitia is not alone in her experience with other members of the epilepsy community, and there are many PatientsLikeMe members who understand the value in connecting with and learning from others who understand what they’re going through.

 “Being a member of a meaningful team is time well spent. I can still contribute in some way to the greater good. It means that there are still things I need to do and be a part of despite my challenges. For anyone who has an illness or disability, you have to widen your world to help others. That is what ultimately will help you. When I was at my very worst, my husband told me I needed a new hobby. I was in medical offices 2-3 times a week, and now it is once a month. That is progress I can see!” – Becky (Rebelor), also a member of our 2014-2015 Team of Advisors, who is living with epilepsy.

“I joined [PatientsLikeMe] because I didn’t want to feel alone anymore. Simply put. And I know that I could be helpful with my life experience of having epilepsy to someone else just like me.” – PatientsLikeMe epilepsy member

“I wish I had found [PatientsLikeMe] years ago. It could have been a huge help to me during the worst years. My seizures are now controlled using a mixture of medications. Now I hope to help people who are still in those dark times.” – PatientsLikeMe epilepsy member

Are you living with epilepsy? During the month of November – and year-around – check out what the Epilepsy Foundation is doing to promote epilepsy awareness and help those living with epilepsy.

You can also connect with more than 9,800 others like you on PatientsLikeMe, and share experiences with more than 10,800 others in the epilepsy forum.

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#NotAlone Recap: On PatientsLikeMe, no one is alone…

Posted October 16th, 2015 by

As our #NotAlone campaign wraps up, we hope you’ve been encouraged by the thoughts and personal stories of how other members have felt less alone by learning, connecting and tracking on the site.

We recently had a look at all the member posts in the #NotAlone forum and wanted to share some highlights with you!

 “I feel less alone coming here; it also helps me keep track of things in a way I never could before … It helps to know others truly understand, as someone who hasn’t ‘walked in our shoes’ cannot fully understand.” – member living with MS

“…we all belong to a group where we have many similar experiences, where physical chronic pain seems to be one of the overwhelmingly major characteristics of what we all experience. That bonds us together as nothing else can. It does make me feel like I’m not alone, that none of us are alone as long as we have each other.” – member living with Fibromyalgia

“I have learned more here than I ever imagined possible and I have made friends. Good quality friends that really understand. I have shared with them and they have shared with me … I have learned there is power in numbers.”  – member living with MS

You can always revisit the #NotAlone forum threads to see more of what people said, and keep sharing your own stories whether in the forums or on your profile. Remember, you can help someone just like you see they’re #NotAlone every time you reach out to others and share your own real-world experiences.

#NotAlone, together.

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Sharing and Learning with PatientsLikeMe

Posted December 22nd, 2010 by

In December community newsletters (launched earlier this week), we asked some of our members to think about what they’ve shared and compared in 2010.  Below are highlighted answers from each interviewee across all nine community newsletters.  Thank you for your contributions.

We also want to thank all of you who have contributed to the 90 newsletters we ran this year, including the newly launched ones in our Epilepsy and Transplants communities.  Finally, a special thanks goes out to our newsletter writer, Amy Morton, for pulling these together every month.

To review all of our newsletters, you can visit our archives page here.

* * *

2166 (Amy)

How has PatientsLikeMe helped you learn and share this year?

tommymkr (Tommy Maker – ALS Community)

PatientsLikeMe has provided me with new friends-people who are experiencing the same problems as I am. I’ve learned that there isn’t a single question that won’t get a vast myriad of answers from the community. I’ve learned that we’re all very different people, and I’ve learned we don’t always agree.  I’ve learned that we all care enormously for each other and are very eager to help those who find themselves in the same boat as we are. But most of all I’ve learned that I am not on my own.  I’m not the only one facing a bleak future and not the only one who is able to appreciate what he has at the moment.

cobe (cobebu8 – MS Community)

I really like it here in that I can keep track of all my meds with their side effects, etc.  Plus I like it that I can list symptoms and have a history of all of it to review and learn from and share with my doctors. I hope that my input on meds, therapies, etc., helps other people. It is good not to be alone.


mtnlady (mountain lady – Parkinson’s Disease Community)

It has given me the experience of reading about others who are in situations similar to mine.  It has shown me that I am not alone.  I love reading the newsletters and the comments from other readers. It also helps to keep me up-to-date on any new suggestions or treatments.

Also, I became acquainted with someone online through PatientsLikeMe.  We actually live in the same town, both work in the field of Education and have had Parkinson’s for the same length of time.  Getting together with her was a pleasure, and she introduced me to the idea of meeting with a support group, which I had never done before.

ellie
(ellieGADsufferer – Mood Conditions Community)

It is invaluable. I find the Symptoms and Treatments areas so helpful. I have learned (from genuine people who are taking these meds) that some of my “quirky” side effects and sufferings from the meds I take can and do happen to others and are not imaginary.  (My general practitioner and Consultant just brush the list aside and shrug their shoulders).

I have learned that I am not alone with my illnesses, which is good to know, and I have also learned that there is “light at the end of the tunnel.”  I try to keep my profile as up to date as possible in the hope that it will be helpful to at least one or two members. I rate my Daily Mood [now called InstantMe] at least five days per week and always complete my Mood Map, again for the same reasons.

Well done PatientsLikeMe and its members. Keep going, you are doing really good work and long may it continue.

andrew (andrewn78 – HIV Community)

I love organization and having PatientsLikeMe help me to organize all of my medical information. I would like to have an ability to log simple notes on the PatientsLikeMe profile so every time I go to my doctor I can make some general notes (if needed) for that visit on my experience and what was covered with my provider.

(Note that all users can now use InstantMe to add notes/annotations to your Doctor Visit Sheet)

nates (Nates-Sweetpea – Fibromyalgia/CFS Community)

PatientsLikeMe has been such an encouragement to me, not only in what others have given to me through sharing their stories, but also by opening up a window for me to be an encourager also. I love the newsletters that are super reminders of how to not get off track, and also how to be good to myself.

kg
(kg10043 – Epilepsy Community)

I think I have been pretty good at sharing, but this has been one new method, especially with some of the health issues with others facing similar situations. In the past I have answered questions for people who had their first seizure or just questions, but with this site, I am able to communicate with others who have had the same operations, take the same medications, etc., and really understand things better (from a different perspective).

kidneygirl (kidneygirl1198and0505 – Transplants Community)

PatientsLikeMe has helped me so incredibly much!  I’ve made so many friends that I thank God for every day.  It’s just like, no matter what you have or haven’t had transplanted, whichever organ you need or have, everyone on here understands you and what you’re going through.

I just really hope that people can say that about me.  It took me awhile, but no one is alone out there.  Everyone is going through their own personal struggles.  I just want everyone to know I am all ears!

PatientsLikeMe member lscanlon